Life after care: psychological adjustment to bereavement in family carers of people with dementia

Int Psychogeriatr. 2016 May;28(5):815-23. doi: 10.1017/S104161021500201X. Epub 2015 Dec 9.

Abstract

Background: Despite well-documented evidence of the psychological effects of caring for a relative with dementia, little is known about the bereavement experiences of family carers. The aim of this study was to explore the key psychological changes associated with carers' adjustment to bereavement and "life after care."

Methods: All carers taking part were recruited from a day care center, providing specialist services to people with dementia. We asked carers to describe the key changes associated with psychological adjustment to bereavement through semi-structured qualitative in-depth interviews. Strategies carers used to cope with and adapt to their new role were also explored. All data were thematically analysed.

Results: Thirty-one carers were interviewed. The most frequent emotional reactions to bereavement were feelings of loneliness, loss, void, sadness, anger, and relief. Most carers were able to adapt to their new role, and engaging in pleasant activities was the most frequent strategy used to cope with loss and "life after care."

Conclusions: Feelings of loneliness and loss are amongst the key emotional reactions shaping carers' adjustment to bereavement. Most carers are able to adapt to loss; however, a minority experience increased psychological distress after the death of their loved one. A small percentage of carers continues caring for other dependants. Further research is required to identify how carers of people with dementia adapt to bereavement and how this increasing number of individuals can be best supported.

Keywords: bereavement; caring; dementia carers; post-caring; qualitative research; serial caring.

MeSH terms

  • Adaptation, Psychological*
  • Aged
  • Bereavement*
  • Caregivers / psychology*
  • Dementia / nursing*
  • Emotional Adjustment*
  • Female
  • Humans
  • Interviews as Topic
  • Male
  • Middle Aged
  • Qualitative Research
  • Social Support